#myopathy

little background about me: i've had chronic pain for almost two years now, and still no solid diagnosis. different things have been thrown out there, but a lot of the tests i've had done have come back negative, not significant, or inconclusive. the only thing that was ever yes yes definitely positive was a mri of my thighs that showed inflammation. however, a couple months later when i had a muscle biopsy of my thighs done, they ruled it not significant, and it didn't point to a further diagnosis. my rheumatologist decided to put me on prednisone anyway, and it HELPED SO MUCH. at least temporarily, i'm tapering it now since it's not good to be on long term. but it helped with my energy levels and my pain/numbness/weakness/tingling/burning/tingling pain in my lower body. i definitely couldn't have finished college without it.

recently, i was put on lots of different meds, and i've been have a bad flareup and new weird symptoms since the beginning of the summer. i also started using weed to help manage pain and fatigue and it helped a lot. however, because i've had so many new (and some very severe) symptoms and couldn't tell anymore what was a side effect and was a symptom, i decided to stop/taper every medication/drug that i could about a week ago (with my PCP's help). i'm still adjusting.

however, the thing i'm probably most concerned about rn is my new neurological symptoms that have been progressing. while i've had things like sensory issues or brain fog in the past, it's taken such an intense turn to the point that i'm pretty sure i've started having seizures? i hesitate to say that in case i'm wrong but i've been having them a lot. since stopping my meds, it seems to be helping slightly. my brain doesn't feel as overloaded. but i'm still kind of having them. i did go to the ER for one after i had an episode in the urgent care waiting room, and they did a CT which looked fine. they diagnosed it as a "headache" and told me to call my rheumatologist to get off my mycophelate mofetil since they thought it was contributing (and i think it definitely was, especially to my digestive system issues, brain fog, and weird random i'm so sad but idk why mood swing things).

i guess my question is, for people who have had seizures start developing later in life, how did you know it was a seizure? i mean i've looked up stuff online so i'm pretty sure but of course i can't really be sure. and how do you manage seizures day-to-day?

also, for people with chronic pain in general, how do you get people to believe you? i just feel like everyone is starting to think my pain is psychosomatic, which i think of course, some of it is. everyone experiences psychosomatic pain sometimes, and i do have a history of mental illness. but i actually feel pretty good right now!! and i'm doing everything i can to limit my stress, pay attention to my body, give myself positive affirmations, rest, do some gentle movement throughout the day, sleeping a lot (8+ hours usually) on a regular schedule, trying to eat a decent diet, meditate, stretch, i mean, i am really trying everything i can.